Bread is the staff of life for most of us–but for some it can actually cause pain and suffering. Wheat and everything else containing gluten can make their lives miserable. They can be listless and suffer from digestive woes, joints that ache, and a myriad of other problems.

The affliction is called celiac disease. It is a reaction to gluten, a protein most commonly found in wheat but also in rye and barley as well. It turns up in pasta and crackers as well as bread. It can surprise you in meat sauces, ice cream, medications, and cosmetics.

It is far more than a wheat allergy. In fact, it is not an allergy at all but an autoimmune disease.

Your immune system attacks the gluten and harms your small intestine when you eat wheat, rye or barley, according to the American Celiac Disease Alliance (ACDA). The result is a damaged intestine that makes it difficult for your body to absorb the nutrients you need to be healthy.

It can pop-up in your life almost any time. Sometimes, children show signs of gluten intolerances. Many times, a person is well into adulthood before it is diagnosed.

“Celiac disease is something you are born with, but it is often not diagnosed until later in life,” said Roshini Rajapaksa, MD, of the New York University School of Medicine.

“I think that older people are being diagnosed much more often,” agreed Mark DeMeo, MD, head of a Celiac Clinic at Rush University Medical Center in Chicago and a specialist in gastroenterology and nutrition. “We are basically more cognizant of it.”

The disease is found equally in men and women, the two experts agreed. However, women are more likely to be diagnosed because they are more persistent about learning why they are ill, Dr. DeMeo noted.

Millions Suffer From Celiac Disease

More than two million people in the United States have celiac disease, which is about one in 133 people, according to the National Digestive Disease Information Clearinghouse of the National Institutes of Health. In addition, the inherited potential for celiac may lurk in about one in 22 people, although they may not produce any symptoms.

Sometimes, viruses or infections can damage your immune system and cause celiac. The length of time a person was breastfed and the age a person started eating foods containing gluten might be factors as well—studies show the longer a baby is breastfed, the lower the chance of him or her developing celiac disease.

While genetics is a key factor in determining whether you have or will have celiac disease, “there needs to be another trigger,” Dr. DeMeo said. Stress or surgery can bring it on.

Georgiana Vines fits those criteria. When she learned she had celiac disease, she was 67, a widow and a cancer survivor.

How To Diagnose It

Diagnosis is done via blood tests and, if positive, biopsies of tissue from the small intestine.

Vines had been losing weight and was anemic.

“I was sent to a gastroenterologist by my oncologist because of the anemia,” the Knoxville, TN, resident said. “I also had suffered the weight loss during the illness and death of my husband, but no one seemed concerned about it because my weight was normal for my height and body size.”

Vines had a colonoscopy two years earlier, so the gastroenterologist did not believe she needed another but did do an endoscopy—a procedure in which a tube is inserted in the body for visual inspection. Indications were that she had celiac disease; blood work confirmed it.

“Others tell me they’ve had the blood work first and then confirmation from the endosocopy,” Vines said.

Symptoms of Celiac Disease

“Because celiac has so many different symptoms and can act differently in different people, it often goes undiagnosed for years,” Dr. Rajapaksa said. “So it is important to be checked for it if you are not feeling well, especially because we now know that this is a relatively common disease in the U.S.”

Following are some of the symptoms listed by the ACDA and the National Institute of Diabetes and Digestive and Kidney Diseases:

• Unexplained weight loss
• Fatigue
• Weakness
• Vomiting
• Gas, bloating, abdominal pain
• Chronic diarrhea or constipation
• Unexplained iron deficiency
• Anemia
• Bone or joint pain or arthritis
• Bone loss or osteoporosis
• Depression or anxiety
• Tingling or numbness in the hands and feet
• Seizures
• Missed menstrual periods
• Infertility or recurrent miscarriage
• Canker sores inside the mouth
• An itchy skin rash called dermatitis herpetiformis.

Symptoms may vary according to your age and the amount of damage to your small intestine. It’s possible to have the disease for ten or more years before it is diagnosed. People with celiac disease may not have any symptoms but can still develop complications of the disease over time. Long-term complications include malnutrition, which can lead to anemia, osteoporosis, liver diseases, and cancers of the intestine.

People with celiac disease tend to have other diseases in which the immune system attacks the body’s healthy cells and tissues. They include diabetes, thyroid disease, liver disease, and rheumatoid arthritis. Patients with celiac disease should also get the pneumococcal vaccine due to decreased spleen function which typically fights this infection, and they should have a repeat biopsy about 3-4 months after starting a gluten-free diet to assure improvement/resolution.

There are some patients who are diagnosed via screening and confirmed with biopsy that still remain asymptomatic. These patients, although they feel fine eating gluten, can develop nutrient deficiencies, increased risk of gastrointestinal cancers, increased chance of developing other autoimmune diseases, and mothers with celiac that do not adhere to the diet have greater risk of delivering preterm infants.

A study by Jonas F. Ludvigsson, MD, at Orebro University Hospital in Orebro, Sweden, concluded that celiac sufferers have an increased risk of bone fracture. There are indications that are particularly true for postmenopausal women above 50, according to a study by Michael Davie, MD, consultant physician and director of research at the Charles Salt Centere for Osteoporosis and Bone Disease in Shropshire, United Kingdom, and his colleagues.

No Cure, But Relief Possible

Can anything be done to cure celiac, other than sticking to a restricted diet? “No,” Dr. Rajapaska said. “Just diet. Although people are working on treatments, they are just in the research phase right now.”

There is no way to prevent celiac, Dr. DeMeo said. “It happens.”

“I was frightened,” Vines said, when her doctor told her the blood work confirmed the disease.

“I asked him what he was going to do about this. ‘Send you to a nutritionist,’ he said. ‘Is that all?’ I asked. He said ‘yes,’ and I hugged him. As a former cancer patient, it was reassuring to know that diet was the prescription.”

For most people, following a gluten-free diet will stop the symptoms, heal existing intestinal damage so the villi in the intestine can absorb nutrients into the bloodstream, and prevent further damage. Improvement begins within days of the diet change, with full healing in an adult may take several years. Watching one’s diet becomes a lifetime commitment. Family members of those with celiac disease should be screened as well since they are at an increased risk of also having the disease.

Balanced Though Limited Diet

Instead of wheat flour, use potato, rice, soy, amaranth, quinoa, buckwheat, or bean flour. Buy gluten-free bread, pasta, and other products. An increasing number of retail grocery stores carry them. Organic food stores also are sources. Check on-line for gluten-free products.

Eating out is possible, although it can be a challenge. Ask your server or chef if they have a gluten-free menu. If not, ask about ingredients. Order your meal accordingly.

Vines is careful to ask for gluten-free foods when eating out. On a recent cruise, she found sufficient gluten-free foods, including tasty bread. Her waiter noted that the chefs baked gluten-free bread for several passengers who could not eat wheat.

“More and more restaurants are aware of this disease,” Vines said. “Some, particularly Italian restaurants, have gluten-free menus. Others are prepared to substitute dishes.”

It’s Not Just Food

Check product labels and talk with your pharmacist. Even your prescribed medications and lipsticks may contain gluten.

The Food Allergen Labeling and Consumer Protection Act (FALCPA), which took effect in 2006, requires food labels to clearly identify wheat and other common food allergens in the list of ingredients. FALCPA also requires the U.S. Food and Drug Administration to develop and finalize rules for the use of the term “gluten-free” on product labels.

            – Susan S. Stevens

Resources:

• American Celiac Disease Alliance: www.americanceliac.org
• American Dietetic Association’s Celiac Disease Nutrition Guide: www.eatright.org
• Dr. Mark DeMeo: http://rush.photobooks.com/directory/profile.asp?dbase=main&setsize=10&last=demeo&Submit=Search!&pict_id=0005890
• Dr. Jonas F. Ludvigsson: http://ki.se/ki/jsp/polopoly.jsp?d=16569&a=44710&l=en
• Dr. Michael Davie: http://www.rjah.nhs.uk/consultants.aspx?id=79
• National Digestive Disease Information Clearinghouse: www.celiac.nih.gov and
• http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
• National Food Allergen Labeling and Consumer Protection Act:  http://www.fns.usda.gov/fdd/facts/nutrition/FoodAllergenFactSheet.pdf
• Dr. Roshini Rajapaska: http://www.med.nyu.edu/people/rajapr01.html